Updates-Page 1

Happy Birthday to me!!! I am 9 mths old today! Now-for the other stuff. Lots has happened since I last posted an update. I have had LOTS of tests and results.

The first tests I had was an EEG and a Visual Evoke Response (VER) test. I had to be sedated for both of these tests and I HATED the medicine for that! They hooked up all these electrodes to my head and measured brain waves for the EEG and used the electrodes and these funny looking goggles for the VER. The EEG came back abnormal-which means I may be having seizures and the Dr. put me on a medicine called Topamax. The funny thing about this is-even though I haven't started my medicine yet because we had to wait for the pharmacy to order it, I haven't had a seizure since the EEG! That has been almost a month seizure free! Mommy and Daddy say I do stuff like that-I wait till the last minute until I decide I want to do the right thing!

I failed the vision test. The Dr. said the messages weren't getting to my visual cortex-which means I am cortically visually impaired (CVI). I can see things but I am having a hard time processing what I see. Vision therapy will help me use my vision better, so I will start that this summer. Mommy and Daddy are VERY excited about vision therapy and the idea of me seeing better!

I went to see the plastic surgeon about my cleft repair and we scheduled that for July 16. While we were there he decided he wanted a CT scan of my head because it looks like it is growng in an odd shape. He said this could be because of something called craniosynostosis-which means that the bones in my skull could be growing together too early. This scared mommy and daddy to death, but after they did some research and talked to some people they found out it is pretty common and not a huge problem. If I have this though-I have to probably have another surgery sometime! I had the CT scan (another sedated test) and we haven't heard from the Dr. yet about the results.

I went to the orthopedic Dr. about my feet and he said they looked fine and I only had to wear my shoes at night from now on!!! I was VERY happy. He also did an x-ray of my hips because they are still a little tight. He said my bones are growing a little slow and this could be because my hips were dislocating OR because my bones are just immature. He said he thought it was the immature idea, but JUST to make sure he wanted an ultrasound done. If it was dislocation, I would have to wear ANOTHER brace. Mommy was NOT happy about that at all. Anyway, I had the ultrasound and the Dr. that did it said my hips looked fine and weren't dislocating. So-I guess the bones are just growing slow! We haven't heard back from my Dr. yet, but he said he would call if we needed a brace-so I guess we are ok!

Another test result we got was a second opinion on my MRI. Mommy sent my scans to a place called "The Carter Centers for holoprosencephaly and related brain malformations". The scans were reviewed by Dr. Barkovich at the University Of California. He confirmed the diagnosis of holoprosencephaly (HPE) in the mildest form-MIHF. This means I have some structures in the middle of my brain that fused together. He also diagnosed me with polymicrogyria (PMG), which means I had some nerve migration in my brain. Mommy and daddy knew about this, but they didn't have a name for it. Dr. Barkovich said my case was very unique in two ways. The first being although I have HPE, I have very few characteristics and I have an almost normal looking brain. I have everything there to walk and talk and I have none of the endocrine, temperature, or growth problems commonly associated with HPE. Also, I am the only case he has ever seen-or that has ever been documented-that has both HPE and PMG. He wanted mommy and daddy's permission to publish my findings in a medical journal and they said he could. HPE and PMG are very similar and this news doesn't mean anything different for me. The PMG does explain where my seizures come from, but thats really the only difference. Dr. Barkovich did say I had no cyst in my brain as first thought-so that was pretty good news! He also said that I had almost all of my Corpus Callosum-just the ends were missing!

I am doing very well otherwise. Mommy and Daddy say I am a very good baby. I don't cry a lot, I sleep good at night, and I play well by myself. I can sit up pretty good now, I still bear weight on my legs and can even "prop-stand" on certain objects, I have started playing w/ toys more and bringing them to my mouth, and I babble all the time. I am really trying to talk and if someone talks to me I try my hardest to talk back! I am a very happy baby and I LOVE to give my mommy kisses. I have been having much better PT and EI sessions and Susan and Gay are very pleased with me. I still don't use my vision well, but we will work on that later this summer. I also start OT with a lady named Ariane pretty soon. She will help me with my hands and small motor skills, and she will help me with my feeding-especially after my surgery!

Thats about it for now. I am just growing (15 lbs right now) and learning and having a good time! I will let everyone know about the surgery and other test results as I get them. Thanks for visiting the page and come back soon!

Easter morning

This is me, mommy, and daddy at church on Easter.

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-Emily Perl Kingsley